Capital District Parkinson's Support Group
Past Meetings
Thurs. June 10, 2021 ZOOM @7 Topic: Abbot DBS
There's no science fiction here.
The fast-growing field of devices that change your nerve activity by sending electrical signals to a specific area in your body, according to the International Neuromodulation Society.
From neuromodulation comes a therapy called a deep brain stimulation (DBS). For people living with Parkinson's disease and essential tremor, deep brain stimulation can be a revelation as they manage complex medical conditions, transforming their lives for the better.
Join us to learn more about DBS and how it's enhancing the lives of people with Parkinson's disease and essential tremor.
Thurs. May 13, 2021 Stephanie Longston, Occupational Therapist - Overview of AMC Outpatient Occupational Therapy
Thursday, May 13, 2021 7:00 p.m. Eastern Daylight Time
Stephanie Longston, Occupational Therapist, Certified Stroke Rehabilitation Specialist, LSVT BIG Certified
Albany Medical Center Outpatient Occupational Therapy
Please call (518) 262-9700 to make an appointment.
Hours are Monday - Thursday, 7 a.m. - 7 p.m.
Friday - 7 a.m. - 3:330 pm.
Albany Med’s Outpatient Occupational Therapy services are located at 99 Delaware Ave. Delmar NY, 12054.
Overview of the OT clinic and the functional living environment, including a kitchen and bath tub, equipped with adaptive equipment people can try out before deciding if they want to purchase for home. Stephanie will be able to give a virtual tour of the OT clinic, showcase the equipment, and take questions.
Stephany demonstrated many tools and products that can be used to enhance quality of live and independance.
Notes:
Q. is there a store or catalog that sells this?
A. Amazon or Bed Bath and Beyond or other stores
Q. Are OT sessions covered by insurance?
A. Yes. Same as PT. There may be a co-pay. You need a Dr. referral,
Q. Please explain a little more about the help for driving.
A. Albany Med has a complete driver evaluatuon program including a driving simulater.
Q do you go to a person's home to evaluate their situation and what may be needed, say in the kitchen or bedroom
A. No. We do outpatient here. If you are housebound there is in home OT available.
Q. thank you!
From Stephanie Longston - info about devices
https://essentialtremor.org/resource/assistive-devices/#1583851656463-338a3eab-8753
https://www.caregiverproducts.com/body-care-grooming-kit.html
https://steadiwear.com/blogs/essential-tremors-in-daily-life/parkinson-adaptive-equipment
Some people were talking about the art activities at
Paul Nigra Center for Creative Arts
2736 NY-30, Gloversville, NY 12078 | P: (518) 661-9932 | E:
https://www.pncreativeartscenter.org/
Thurs. Apr 8, 2021 07:00 PM - Dr. Michele Dagostine and Adamas Pharmaceuticals present about Gocovri
Dr. Michele Dagostine, of the Hartford HealthCare Medical Group, Chase Family Movement Disorders Center, along with Adamas Pharmaceuticals Inc., maker of Gocovri (amantadine extended release capsules). On Feb. 1 the FDA approved Gocovri to also treat “off” episodes in patients taking Levodopa.
Thurs. March 11, 2021 07:00 PM - How care partners can help a PWP in daily living without injuring themselves
Dr. Sarah Cipperly, PT, DPT
Having grown up in Troy, NY, Sarah has returned to the capital district after graduating with her Doctorate of Physical Therapy. Sarah attended Nazareth College in Rochester, NY, where she was the captain of both the women’s soccer and softball teams. Since graduating Sarah has become a Certified Clinician for the LSVT BIG Program, SFMA and a Certified Clinical Instructor.
Thurs. February 11, 2021 - Michael Burns of MopCo theater will lead us in improv comedy ZOOM @7
Improv, or "the art of composing, uttering, executing, or arranging anything without previous preparation” (Dictionary.com)
Michael Burns - will teach us to laugh and show us a fun, low-pressure way to reduce your anxiety, build resilience, improve your connection with other people, and strengthen our ability to adapt to life on life’s terms.
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUscOGppzMsGNxmbF0iCV9i_Tk54xf31dId
After registering, you will receive a confirmation email containing information about joining the meeting.
Thurs. January 14, 2021 ZOOM @7 Diet and nutrition.
Speaker: Fran Weiss - Dietition for Hannaford, Registered Dietitian, Fran will speak about nutrition in general, but focusing on older people and Parkinson's diet needs. Do you want to make healthy decisions about what you eat? Did you know that what you can eat can help keep your immune system strong? And also that nutrition can influence blood pressure management? Join Fran Weiss, MS, RDN, CDN from Hannaford as she discusses the impact of good eating on overall health.
Frances Weiss
Thursday December 10, 2020 Holiday Party ZOOM @7
LAST CHANCE TO REGISTER FOR THE
HOLIDAY PARTY!
Let’s CELEBRATE the end of 2020 and look forward together to a happy and hopeful new year.
If you have never been to one of our meetings, this would be a good one to start with.
DRESS UP in your best holiday gear! PRIZES for the most festive!
FOOD - Make your favorite holiday appetizer or cookie and sit back with a celebratory cocktail or mocktail!
Ian and Sharon are sharing their snacks.
SHARE YOUR TALENTS – a story, your favorite holiday tradition, a song or a joke.
GAMES - William and Greg are organizing a fun game with great prizes. Ian will test your trivia knowledge again.
PRIZES will be mailed to you after the party.
Please download the Game instructions
and the Trivia answer sheet
And we’ll hear from BRUCE Plotzky again.
So SAVE THE DATE and get ready for an evening of ZOOM fun together!
Make or share some Party recipes
Click to Register in advance for this meeting
After registering, you will receive a confirmation email containing information about joining the meeting.
Register for the party
Thurs. Nov, 12, 2020 ZOOM @7 - Speaker: Dr. Robert S. Fox, - Eye and vision issues in PD
Dr. Robert Fox has been in practice in the Capital Region Area since 1986. Dr. Fox has completed a residency in Rehabilitative Optometry and is a Fellow of the College of Optometrists in Vision Development (FCOVD). He is board certified in Vision Therapy and Vision Development. Dr. Fox is a charter member of the Neuro-Optometric Rehabiliation Association (NORA).
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PD and vision articles:
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Davis Phinney Foundation
https://davisphinneyfoundation.org/i-have-parkinsons-and-am-experiencing-x-who-should-i-see/
Your issues may be related to the aging of the eye, but there are several issues related to vision that are unique to people with Parkinson’s. So, if you go to your general ophthalmologist, but the problem isn’t solved with new (or first) lenses, ask for a referral to a neuro-ophthalmologist. Neuro-ophthalmologists are ophthalmologists or neurologists who have received specialized training so they can diagnose and treat vision issues that are the result of neurological diseases.
Vision issues a neuro-ophthalmologist can help you with:
Eye movement issues that impact reading, depth perception, ability to focus, etc.
Blinking abnormalities
Dry eyes
External eye disease
Color vision deficits
Visual disturbances
General eye diseases such as cataracts, glaucoma, macular degeneration
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APDA
https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/
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Parkison.org
https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Vision-Changes
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MJ Fox - Webinar: “Vision Problems in Parkinson’s Disease” April 2019
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MJH Life Sciences
https://www.mjhlifesciences.com/
Patients with Parkinson disease were found to be more likely to experience vision and eye issues, such as blurry vision, dry eyes, trouble with depth perception, and problems adjusting to rapid changes in light, compared with people without the disorder, according to study findings.
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National Center for Biotechnology Information
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6597980/
Visual disorders like double vision, dry eyes, and visual field deficits are common but frequently missed in Parkinson’s disease. Here, we aim to increase awareness for these visual disorders in Parkinson patients by discussing several common problems that can be easily diagnosed using comprehensive history taking and a basic neuro-ophthalmological examination. We offer practical guidance for the patient interview and physical exam that can facilitate a timelier recognition of visual disorders. Such recognition has immediate therapeutic relevance, because Parkinson patients are strongly dependent on an adequate vision, for example to optimally benefit from visual cueing strategies.
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World Parkinson’s Congress
Among the most common visual and ocular symptoms associated with PD are dry eye and ocular surface irritation, a problem that may be prevalent in as many as 60% of patients.1 This is thought to not only be related to poor production and abnormal composition of tears, but also due to decreased blink rate with resultant subnormal tear distribution.2 Parkinson’s patients have also been reported to have problems with eye movements, especially convergence insufficiency.
Thurs, Oct 8, 2020 ZOOM @7 Speaker: Dr. Eric Molho
Speaker: Dr. Eric Molho
Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders. Dr. Molho has served as the principal investigator on numerous clinical trials for Parkinson’s disease, enabling him to offer the most advanced treatments and knowledge to his patients.
Announcements and notes for meeting
Oct 8, 2020 Notes
Notes from 10/8/2020 meeting
Welcome
Welcome new members and visitors
Gratitude for our Doctors at the MD Center at AMCH and our PD community
Next meetings will be:
Community
Last year 10 people from the Albany area PD community travelled to Tokyo to attend the 5th WPC. We bonded, learned and saw the sights.
Save the date
Will you join us at the 6th World Parkinson Congress to be held in Barcelona, Spain from June 7– 10, 2022. More than 3,000 people from 60+ countries are expected to attend the WPC 2022. Delegates will be those who are dedicated to understanding, researching, treating, and curing Parkinson’s disease (PD), including those who are living with it.
Nancy Eson: We would like to gage interest in a care partner support group. If you are interested in knowing more, joining or leading this type of group, contact us through the website
Dr. Molho will take questions through chat. You will be muted to avoid distractions.
Dr. Molho has graciously agreed to be speaker at our October meeting for at least the last five years (I don’t have records before that) and has been an excellent source of PD education for us.
Dr. Molho is the director of the Parkinson's Disease and Movement Disorders Center and currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease.
Dr. Molho (thank you William for the fantastic notes)
William’s notes on the Capital District Parkinson’s Disease Support Group meeting, Thursday, October 9, 2020:
Turnout: At one point we were at 45 Zoom screens, representing 60-70 people. I don’t know where we’d put everyone in a face-to-face meeting ;-)
WPC 2022: Dr. Molho promoted the next World Parkinson’s Congress, to be held in Barcelona June 7-10, 2022.
COVID-19 and PD: Dr. Molho’s office gets updates 2X a week on NYS and local Coronavirus and Covid-19 numbers. The state continues to report low rates of infection and hospital admissions, but Eric reminded people to stay vigilant and not get lax on prevention and protection measures. Some parts of the state are reporting new spikes and clusters. People with PD are reported to be at higher risk, but that is likely more due to age and other risk factors than due to PD by itself. People must assess their own level of comfort with risk, and use common sense when determining how physically intimate to get with grandchildren and other loved ones.
COVID-19 and ongoing PD treatment at Albany Medical Center: Ninety percent of consultations are currently in-person at the Mov’t Disorders Center. Of course, that number could change if the pandemic environment changes in the Fall and Winter. All safety and prevention protocols are being strictly observed. Nursing homes and hospitals have normalized their visiting policies, a loosening from the lockdown of the early months of the pandemic starting in March 2020.
Effects of pandemic on ongoing PD research & clinical trials at AMC: The initial lockdown bogged down such projects, as suddenly extra precautions and risk reduction had to be rushed into place for everyone. Things have started up again, however. For comprehensive list of clinical trials, see website referenced in the Chat below. Here is a summary of Dr. Molho’s discussion of the major studies going on at Albany Med:
— The KARMET Study (aka the "Poop Study") on constipation and PD, being conducted with the firm Enterin Inc., looking at early involvement of the enteric nervous system in PD. This is a novel therapy, involving a compound that interacts with alpha synuclein protein. For more information or if interested in participating, contact Dr. Molho’s office.
— Motor Fluctuations Study, looking at “On/Off” states and working on treatment to level out the fluctuations. Could involve a combination of long-acting Levodopa and short-acting Levodopa. This would be an improvement on the currently-prescribed drug Rytary. The monitoring of symptoms by participants in this study is demanding, Dr. Molho said.
— Trial of a completely new drug, Cerevel, specific to the D-1 receptors. This study is just getting off the ground
— Federally-funded study to develop automated way of looking at brain MRIs to try to more accurately distinguish PD from other neurodegenerative disorders like PSP and MSA.
— A Study to Evaluate the Efficacy of Prasinezumab (RO7046015/PRX002) in Participants With Early Parkinson's Disease (PASADENA)
https://clinicaltrials.gov/ct2/show/NCT03100149
**N.B.: You can get a sheet from the AMC Movement Disorders Center listing and describing all the clinical trials Albany Med is involved in for PD and other neurological disorders.**
Q&A with Dr. Molho: Exercise, exercise, exercise. “There is no proven way to slow the progression of PD other than exercise.” A mixture of aerobic and resistance training. Stationary bikes, yoga etc. etc. Importance of finding an exercise activity you enjoy — otherwise you won’t do it.
Stem cell treatments: Some exciting prospects but even more unknowns and unintended outcomes
Probiotics and probiotics for constipation: Can work for some people but not for others.
— 30 —
Annotated chat below:
18:56:55 From Carissa O'Rourke : I am doing LSVT but will be going out on maternity leave next week. There is a physical therapist at Albany memorial doing it. her name is Janet and we’ve been working together
19:10:49 From Manuel Cruz and Suzanne Roberson : Can Dr. Molho speak to the benefits of exercise?
19:11:12 From Thomas Estep to Nancy and Jud(Privately) : My name is Thomas Estep, I am a representative with Amneal Pharmaceuticals in Albany. I can have speakers present at other meetings. My email is . 518-506-8930.
19:30:06 From Kristi LaMonica : Are new clinical trials listed on the AMC movement disorders webpage?
19:34:46 From Nancy and Jud :
19:40:23 From Nancy and Jud : ?
19:49:22 From Steve & Tracy : what is the value of the
19:49:49 From Steve & Tracy : what is the unified Parkinson rating scale?
19:51:26 From Kristi LaMonica : will AMC be part of the monoclonal studies? Also for the D1 drug, a patient can’t be on meds at all?
19:51:27 From Steve & Tracy : what in the digestive tract causes the growth of alpha-sinucleans?
19:57:39 From Bruce Plotsky : What are your thoughts on 'young plasma'?
20:01:08 From Steve & Tracy : if someone exercised 30 min/day before being diagnosed, should they increase the intensity and/or daily duration after diagnosis?
https://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise
https://davisphinneyfoundation.org/high-intensity-exercise-slows-parkinsons-progression/
20:03:33 From JoAnne Stanoski : could you, please discuss stem cell, laser treatment & the use of oxygen ( hyperbaric ) treatment for park. thanks
20:07:16 From JoAnne Stanoski : as an FYI for everyone, I did a probiotic regime a while ago & now have no problem/issues w/constipation.
20:09:21 From Manuel Cruz and Suzanne Roberson : Any promise from fecal transplants?
20:13:14 From JoAnne Stanoski : are there any new things (treatments) going on in Europe that we don’t have here?
20:22:46 From Victoria Plotsky : Thanks Dr Molho!! : )
20:23:02 From Carissa O'Rourke : thank you! great information
20:23:40 From Kristi LaMonica : Thank you!
Thurs. Sept 10, 2020 ZOOM @7 - Care Management: Strategies for Successful Aging
Care Management: Strategies for Successful Aging
Hear how working with an Aging Life Care Professional (ALCP) can offer you optimal success in identifying and planning for the many potential challenges of aging. A care manager can help ensure the quality of life you choose to create and minimize the need to face crises unprepared.
Presenter: Tanya Zelman Schwartz, LCSW-R, C-ASWCM, Care Manage for All LLC.
Tanya Schwartz, LCSWR, C-ASWCM
Advanced Professional Member of ALCA
Care Manage for All, LLC.
518-512-9679
Thurs. August 13, 2020 ZOOM @ 7 - Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.
Speaker: Donna Stressel, OT, of Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.
Multiple studies have shown that drivers over age 60 are generally some of the safest on the road. They are more likely to avoid unsafe behaviors such as speeding, driving under the influence of alcohol, talking on cell phones, and not wearing seat belts. That said, it is important for elderly drivers, and their loved ones, to make sure they are road-ready and driving as safely as possible.
Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program offers a comprehensive array of services for elderly drivers, adolescents with learning needs, and the disabled, including clinical assessment, on-the-road evaluation, driver rehabilitation and consultation/education about adaptive driving services. For more information on the program or CarFit programs in the area, call 518-386-3601.
You must register in advance to attend this meeting.
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Resources
Parkinson.org
Davis Phinney
https://www.davisphinneyfoundation.org/blog/how-long-can-i-keep-driving-if-i-have-parkinsons/
M.J. Fox
https://www.michaeljfox.org/news/ask-md-driving-and-parkinsons-disease
Jul 19, 2020
Sunday, July 19, 2020 – Summer Picnic – CANCELLED
Summer Picnic – CANCELLED
The Town of Colonie has cancelled all pavillion reservations for the summer.
Thurs. July 9, 2020 ZOOM @7 - Martel Catalano - founder of Beyond My Battle
BMB provides support services and educational resources to foster engaged coping methods such as introspection, communication, and self-care. Martel will speak about the founding, philosophy and services provided by the organization.
You must register in advance to attend this meeting.
Jun 25, 2020
June 25th meeting Topic - "PARKINSON’S IS STRESSING ME OUT!"
How stress and anxiety are related to Parkinson’s and what you can do about it.
We will discuss these two short articles and we will share our own ideas about handling stress.
You must Register in advance for this meeting
After registering, you will receive a confirmation email containing information about joining the meeting
Jun 11, 2020
June 11, 2020 7PM ZOOM meeting – Speaker: Ella DiPietro, owner of Saratoga CBD Co.
Meeting notes:
Speaker: Ella DiPietro, owner of Saratoga CBD Co.
her website:
ADPA Statement about medical marijuana CBD and PD
https://www.apdaparkinson.org/article/medical-marijuana-and-parkinsons-disease/
MJ FOX
https://www.michaeljfox.org/news/ask-md-medical-marijuana-and-parkinsons-disease
Davis Phinney
Using CBD oil to treat symptoms of Parkinson’s is becoming more and more common; however, the lack of oversight and inconsistency from batch to batch are big problems
There’s a trial going on at the University of Colorado right now for a CBD pill to treat Parkinson’s tremor
The biggest hurdle for CBD studies is that there’s no monetary support – unlike the money that big pharma companies get
If you want to experiment with CBD oil, make sure that you tell all of your providers about it because there can be serious drug interactions and be aware that each batch you get can be very different
NIH.GOV (National Institute of Health)
https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=cbd&commit=Search
FDA
medlineplus
Project CBD (mentioned b Ella and links to her company)
https://www.projectcbd.org/guidance/get-started
"Project CBD was established in 2009 by journalists who had been covering the medical marijuana story—the science, the movement and the industry. "
May 28, 2020
May 28, 2020 @ 7 PM
ZOOM discussion: Creativity has been shown to be helpful for people with Parkinson’s. Let’s share and learn about how our creative pursuits impact us.
We recommend, but don’t require, reading the articles linked below.
Psychology Today - PD drugs and creativity
ADPA - Art therapy and PD
You must Register in advance for this meeting
After registering, you will receive a confirmation email containing information about joining the meeting.
May 14, 2020
May 14, 2020 – 7 PM ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker
ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker and a Certified Aging in Place Specialist – Topic: Simple modifications that can help seniors make their homes safer and easier to navigate etc.. You must register to attend this meeting. Join our mailing list for meeting invitations.
30-Apr-2020
Thursday, April 30 2020 – 7 PM ZOOM meeting. You must register to attend this meeting.
Location: from your smart phone, tablet, computer. or audio-only telephone dial-in. Bring your own refreshments.
The topics for discussion will be up to you.
Do you know a person who will help make my home accessable?
Do you know a person who will help make a financial or estate plan?
Coping with social distancing?
Access to medications, health care?
Can someone offer to help me with ____?
Can I offer to help someone else with ____?
What to do while keeping social distance?
Can you share a song, a joke, a poem, a story, a picture, a recipe, a meditation?
We all gain by continuing social interaction, and we can still see and talk to each other by joining a scheduled internet video ZOOM meeting.
You must register to attend this meeting. Registration infirmation will be sent by email to addresses on our list.
April 2, 2020 Meeting – on-line ZOOM meeting
March 12, 2020 – meeting – CANCELLED. Beverwyck meeting room closed due to virus precautions
Saturday, February 15, 2020 at 2:00PM Meeting. LSVT BIG
Saturday, January 11, 2020 at 2:00 PM Meeting – DBS
Saturday December 14, 2019 – Holiday Get Together
November 14, 2019 – Meeting. Topic Rytary Taking “ON” Parkinson’s Disease Presentation by Duarte Machado, MD
September 12, 2019 Meeting – Recognizing OFF Periods Dr. Durphy, INBRIJA
Recognizing OFF Periods Dr. Durphy, INBRIJA
Mike Rosa, David Wagoner, Acorda
July 11, 2019 meeting – Reflections from the World Parkinson’s Congress in Kyoto Japan
June 13, 2019 meeting – Michael Burns -Mop & Company, will lead us in improv comedy.
May 9, 2019 Meeting – Dr. Robert Fekete, Movement problems in Parkinson’s Disease. With Brian Bennati Adamas Pharmaceuticals, Inc.
14-May-20
April 11, 2019 – Meeting – Albany County Department for Aging
February 14, 2019 meeting – Tom Ford – Massage thera
January 10, 2019 meeting – Susan C. Hare, Albany ENT Speech, Swallowing,Voice
November 8, 2018 meeting – LSVT BIG and Physical Therapy?? : Sarah Gutenmann.
September 13, 2018 meeting – DBS – Dr. Jennifer Durphy, with Christopher Henessay representing Abbott Infinity
August 9, 2018 – meeting – Rachel Kurtz – Holistic Health Coach
July 21, 2018 – Saturday – summer picnic at Crossings Park in Colonie.
June 14, 2018 – meeting – Chrissy Stack – MedRhythms music therapy.
June 14, 2018 – meeting – Chrissy Stack – MedRhythms music therapy.
Chrissy Stack, MS, MT-BC, NMT/F, CBIS
Neurologic Music Therapist Fellow
Business Development Manager
MedRhythms, Inc.
ACBIS Board of Governors
Mobile: (518)-573-1554
More
May 10, 2018 meeting – topic – Laughter is the best medicine – Michael Burns
11-Jun-20
April 12, 2018 – Meeting – Caregivers share questions and experience separate from people with Parkinson’s
March 8, 2018 – Meeting – Dr Jennifer Durphy – anxiety and depression in P
February 10, 2018 – Meeting – Steve Hovey – Davis Phinney Foundation Ambassador : A wellness approach to dealing with Parkinson’s
January 13, 2018 – Meeting – Topic : Rachelle Smith-Stallman, Dance Through Parkinson’s instructor
November 9, 2017 – Meeting : Topic : Open discussion about living with PD.
October 12, 2017 – Capital District Meeting Notice – speaker – Dr. Eric Molho
September 14, 2017 – meeting notice -LSVT BIG
August 10, 2017 – Using Technology to Help Manage Parkinson’s
July 6, 2017 – Meeting cancelled. No meeting in July – picnic at the Valley Cats baseball game instead
June 8, 2017 Meeting – Karen Wood from PharmaCannis Medical marijuana
May 11, 2017 meeting – DUOPA – Heintje Calara
April 13, 2017 Speaker – Lynda Shrager – safely access and navigate homes
April 13, 2017 Speaker – Lynda Shrager – safely access and navigate homes